Michael Lewis, MD
Is hysterectomy the definitive treatment?
Patient Awareness Day
The Lifecycle of Endometriosis: From Diagnosis to Coping with Disease
Sunday April 17, 2016
Lenox Hill Hospital, Einhorn Auditorium
Good afternoon. Thank you Endometriosis Foundation of America for having me here. Also, a special thanks to Dr. Seckin. I know you were speaking little anecdotal stories this morning when you started but I do not know if you recall I was – you were the first surgeon I did my first laparoscopic case back in my training over the bridge in Brooklyn. I wanted to thank you for opening my eyes to endometriosis and minimally invasive surgery.
The topic today is very debatable if a hysterectomy is the definitive treatment for endometriosis. I know we only have about ten to 15 minutes to talk about this but I hope that in this time I can explain to you, not as many physicians but also you guys as the patients, to see if this is really the right decision or the wrong decision.
Just some disclosures; I am a consultant for two surgical companies: Hologic and Plasmasurgical.
The objectives of this short talk – how did we get here? Why are we talking about hysterectomy when I think the majority of talks so far have really been more conservative in management, persevering fertility but also for you the patients in the audience, it is not just the young teenagers that we are talking about, or those in their 20s or 30s, but also those who are finished childbearing or even may be already be in menopause. But it essentially does affect all of you here.
I really want to touch on what is the definition of a hysterectomy or removal of the uterus. A lot of patients who come and see me they mention the word that they are coming in for a second opinion that hysterectomy was offered but they are not really sure exactly what that means. Also, just to explain briefly, the risks and benefits of surgery, some of the medical and surgical options and as well help you come to a decision to see what is best.
As we know endometriosis occurs in about ten percent of women of reproductive age. It leads to chronic, cyclic and progressive disease that leads to pain and infertility and has a very complex pathogenesis that has made it very frustrating not just for you the patients but also as surgeons. The answer is not just yes or no, it really depends on the patient’s history, what they have been through already, how many surgeries have they been through before coming see that next gynecologist. And so, again, through some of the key facts that I will mention from the slide, and also what I have been hearing from a lot of you guys in the audience that it is not just a yes/no decision, and it really has a lot to do with your past medical history and what you have been through.
In the past it was more or less seen as the definite treatment and with not as much advances in technology, advances in laparoscopic surgery, it was usually just “okay we’re going to do a hysterectomy as the definitive last option” or you can just continue suffering pain or continue with some pain management. Throughout maybe the past ten to 15 years with higher technology, high resolution cameras for laparoscopy we can see things that were not seen in the past. We can find endometriosis where other surgeons have missed it. So there are a lot more options available to the patient and also to the surgeon but of course that could be confusing, that may actually make it a little bit more difficult when you have too many things to choose from. It is up to finding that right provider that can help you make the right decision.
As it is in my institution and of course most institutions that treat endometriosis it is not just one person taking care of them. It is a multi-disciplinary approach. You do not just have your gynecologist but you may have your physical therapist, nutritionist. You may have the involvement of other surgical providers that may be helping in a case such as colorectal surgery, urogynecologist, and as well pain management that would be used not just pre-operatively but post-operatively most importantly.
What are the indications for hysterectomy? Uterine fibroids which are smooth muscle tumors of the uterus are probably the most common reason but also maybe secondary to pelvic support such as prolapse, abnormal bleeding. There may be other causes of chronic pelvic pain leading to hysterectomy; gynecologic cancer and as well endometriosis and adenomyosis.
What is adenomyosis? That is the endometriosis that is found within the actual muscle of the uterus. It has a very similar presentation to fibroids so you will have that enlarged uterus, abnormal bleeding. It can also be very difficult to diagnose with ultrasound or MRI and may actually lead you to your physician actually telling you that you need a hysterectomy. I am not exaggerating and as I was sitting down there ten minutes ago my cousin’s daughter, who is 17 years old, was just diagnosed with adenomyosis and she just had her first laparoscopic surgery. Someone with adenomyosis at that age is not someone to whom I am going to be saying “you need a hysterectomy”.
Just to define in terms of anatomy I know we are going to simplify things very easily but this is your uterus, your cervix and then the fallopian tubes and ovaries on the side. A physician will mention the types of different hysterectomies; you have a partial hysterectomy, which is the removal of just the uterus and they leave behind the cervix. There is the total, which removes the uterus and the cervix and then you have the total with the removal of the ovaries and tubes. One thing I would stress is that if you are going to have a hysterectomy that you do not leave behind the cervix. A lot of the patients I have seen, and very few that I am actually doing a hysterectomy for endometriosis is usually always for conservative surgery is that they are coming to me because they have had a supracervical hysterectomy and they still have a lot of persistent pelvic pain.
Some good news in regard to the recent trends in hysterectomy is that there has been about a 30 percent decline across the US. Originally it was over 600,000 hysterectomies were done annually and now it is about over 400,000. Again, most commonly because of fibroids that is the reason you are there having a hysterectomy but as well with endometriosis. The only thing that really seems to be constant is because of gynecological cancers. Even in regard as to the route of how the hysterectomy is performed we have seen an increase in the amount of robotic and laparoscopic. But still the amount of open hysterectomies are still the same number being performed in the US and in regard to an open hysterectomy versus a minimally invasive usually when you are doing something where you are standing over the patient you cannot see any evidence of endometriosis. It is very difficult to see with the naked eye versus doing it laparoscopically or robotically.
Things that you need to consider when you are talking to your physician or that he will actually consider is number one; your age, your desire for future pregnancy and which medical treatments you have done in the past which have worked or which have failed, which surgical treatments have you had in the past which have worked and which have failed. It is very important for a lot of the patients who have been seen by multiple surgeons or going to multiple doctors bring along those operative reports Dr. Seckin had mentioned earlier. Reading a report does not say anything, really having pictures or videos of what has been done in the past can really tell us as a surgeon whether or not everything had been completely resected. But that does not mean that everything was resected and it had come back. But it is really important to keep track or a diary or a list of everything you have gone through and present that to your next provider.
Also, what is most important to you? What is going to help you continue, is it really the pain that is bothering you, is it the abnormal bleeding so it is really time – time was mentioned earlier – you need to have that, a lot of time to speak with your physician or provider. It may not just be one session. You may have to do it over two or three sessions where you are just speaking to them not even performing a physical exam. I may have patients where I spend an hour with them and we are just talking about their history the entire time before getting to an exam.
This is what a normal pelvis looks like; normal uterus and normal fallopian tubes. There is actually no evidence of endometriosis versus this on a patient with bilateral kissing endometriomas. This is what is considered stage four endometriosis. Is this a person where the surgeon would say, “Oh no, this patient can’t be treated, they need a hysterectomy”. But that is not going to be the case if this patient I told you was 27 years old and did not have any children. Not that having children would be the most important part with her but it was really the pain. It was not an option to her of having a hysterectomy. She was able to be treated conservatively, removing the endometriomas and performing this without the need of a hysterectomy.
Where else do we find endometriosis? You may find it on the tip of the appendix. You may find it on the gastrointestinal tract. You may even find it on the bladder. And again, where you guys tell us, where you sit down and describe your symptoms will let us know really where we need to look. It is not just the surgeon saying, “Oh, the last resort is we just have to do a hysterectomy to take away your pain”. They may be leaving behind all this endometriosis that is going to be leading to that chronic pain that is going to continue after the surgery. You really need to find a surgeon that will systematically evaluate the pelvis and also outside of the pelvis to see if there is any evidence of endometriosis. That does not include also endometriosis on the diaphragm or the lung. We have found it everywhere.
The University of Michigan has an online health library that you can actually navigate for all these different medical diseases. I was googling on whether hysterectomy was indicated and I came upon this. Their website allows the patient to go through this questionnaire and I guess you develop like a point score to see if whether or not hysterectomy is the right thing for you. One part of this is personal stories of the patients and this is something that is classical to the patients that I would generally see.
This patient Barbara, who is 35 years old, writes, “I have had pain before and during my period for years. I tried nonprescription and prescription medicines to control the pain. Nothing was working. Because my pain was so bad, my doctor suggested that I consider a hysterectomy. I didn’t like the thought of surgery but had to do something about the pain. Since I’d already had two children…and it goes on and on. Again, this may be a scenario where she has had or exhausted all of her medical treatment, all the surgeries and she thinks of this as a last resort. But again, it is finding that right surgeon that will not only find the endometriosis, not just on the uterus or ovaries but elsewhere in the pelvis.
Again, this is on uofmhealth.org. It is a simple questionnaire that you can fill out and it is endometriosis should I have a hysterectomy and oophorectomy? Some things that you may not know is that in patients undergoing hysterectomy and removing the ovaries – ten to 15 percent will still have pain regardless. Depending on your age your symptoms may improve with menopause. So maybe you want to delay having future surgery. Because surgery as well has its risks; infection, bleeding, you may have injury to other organs such as the bowel or the bladder. And there are also long term health risks of removing the ovaries. Long term health risks include earlier onset of both osteoporosis and cardiovascular disease.
How effective is having a hysterectomy for endometriosis? As earlier it was regarded as the definitive treatment for endometriosis. In a study in 1995 when they looked at patients who had hysterectomy if they kept their ovaries and tubes 62 percent had a likelihood of recurring symptoms and 30 percent had to have additional surgery. And in that same study if you had removed the ovaries and tubes 10 percent had recurrent symptoms and only four percent had additional surgery.
But in a study almost 15 years later they looked at pretty much the same thing and most patients did not require additional surgery if they kept their ovaries and tubes. So, should we remove normal ovaries at the time of hysterectomy? Again, I think it also had to do with the changes in technology whether or not they were able to see and excise that amount of endometriosis.
With hysterectomy what about the use of hormone replacement therapy? Can hormone therapy stimulate the growth of residual tissue from the ovary and uterus? Well 15 percent have symptoms regardless of post-operative estrogen treatment. Hormonal therapy is not contraindicated unless for gynecological malignancies and can help patients.
Some of the general medical options that we will be talking about in upcoming lectures will also be NSAIDs which usually start off with ibuprofen, oral contraceptives usually if they do not work and then you may actually end up trying a progesterone IUD, such as the Mirena, GnRH agonist such as Lupron, which puts you into medical menopause , Danazol which some or probably not as many providers use now because of really adverse effects such as deepening of the voice and hirsutism and also aromatase inhibitors, which may actually decrease the amount of circulating estrogen in the body.
So really, what are your options then? You can have hysterectomy with the removal of your ovaries and tubes to treat your endometriosis. You can continue with your conservative treatment, your hormonal therapy, or you can combine the two. Have surgery removing any scarring or evidence of the endometriosis and continue with your medical management post-operatively. It is really a quality of life assessment where you have to see has medical and conservative surgical management helped you. What about future pregnancies? How far are you from menopause? Are the risks of surgery outweighing the benefits of doing it?
This is really your decision in terms of doing the hysterectomy. You have to see really what is more important to you. You have to seek advice from another physician, get a second opinion, speak to family or friends, look at what alternatives to medical management are out there and like that multi-disciplinary approach I mentioned before involve both physical therapy and nutrition. I know the next lecturer is also going to be talking about updates in medical management.